Many years ago, when my youngest son was 11 months old, he was hospitalized during the Christmas season due to hemophilia complications. We enjoyed the different community groups, such as performing arts groups, school groups, and church ministries, that came to share a tiny part of the holidays with…

As the carer of my husband, Jared, who has hemophilia B and a seizure disorder, I’ve realized the importance of communication, understanding, and empathy. Focusing on these values helps us mature in our roles while balancing personal challenges, which for me include being a caregiver, mother, and a person…

Shared decision-making in healthcare was a topic at the National Hemophilia Foundation’s Bleeding Disorders Conference I attended virtually last week. Shared decision-making means you have a voice and your overall well-being should be considered as part of any treatment plan. We think of medicine as a science. But as…

Hemophilia in children is diagnosed at an average age of 9 months, and most children are diagnosed by their second birthday. If your pediatrician suspects your child has hemophilia, you may be concerned about their first appointment with the hematologist. To ease your worries, we’ve put together some tips to help you through…

I have suffered from clinical depression most of my life. Five weeks after my eldest son was born over 22 years ago and diagnosed with hemophilia, my mom passed away. It was not a good time. I had planned on taking maternity leave until after Labor Day, but…

With so many injuries lately, possibly because of a lack of exercise, I found it necessary to finally learn the ropes of self-infusion. Self-infusion of critical factor is important for me to prevent and treat bleeding episodes. As much as I have wanted to learn the craft, I…

After over a year without a gym membership, my wife, Cza, and I are back in our lifting den. We do it for fun and, of course, fitness. I’ve had several injuries during the past few months, all of which I can associate with the lack of physical exercise…

Switching to Hemlibra (emicizumab) can add more than $100,000 a year to healthcare costs for people with hemophilia A in the U.S. who were previously using preventive replacement therapies, according to a new analysis. “Increased use of [Hemlibra] may cause an increase in economic burden for payers without…

Severe, moderate, and mild: These are the degrees with which a person with hemophilia is labeled based on the percentage of clotting factor in their blood. With the word “severe,” one might automatically think it is the worst kind of hemophilia. This level means that a person has less…

Hemophilia B patients who switched to Rebinyn (nonacog beta pegol), an extended half-life factor IX (FIX) replacement therapy, had similar or better responses than with their previous standard or extended half-life FIX replacement therapies, a real-world study in Canada suggested. The study, “Switching to nonacog beta…